THE FIRST INFUSION

March 14, 2025

Yesterday was the first infusion treatment. I was feeling quite anxious before, in the days leading up to the treatment, and on the day itself. Everyone around me was feeling quite anxious as well. The first two treatments I’d had either had so many side effects or didn’t work at all. Though medical types kept telling me that immunotherapy is so much easier to tolerate, and that most people don’t have a lot of nasty side effects, I didn’t kick myself over the anxiety and fear.

Rosie picked me up in plenty of time, and we headed off, my guide dog, Shani in the back seat. We found the place with no trouble, and parking was near the entrance. When we entered, there was so much noise, people laughing and talking, the place echoing everywhere. It ramped up my worries quite a bit. But that place wasn’t the infusion area. We went through a door, where blessed silence and calm prevailed. We checked in, and in a few minutes, they were calling my name to go back to the infusion room.

The room was a big open place with cubicle type areas, half walls on either side and a curtain for privacy. We walked down the long room, passing other patients, until we got to chair 20, my cubicle. There were two nurses and they had me sit in a relatively comfortable recliner type chair, and that’s where I stayed until time to leave.

Both nurses, Sandy and Cassie worked with me. I was impressed with how they did everything, because they verified each other, from accessing my port to starting the meds. Neither made an action or decision without the other’s confirmation. This made me feel safe and I started calming down.

The first step was to put a mask on my face and a drape over my chest, because they have to keep the area clean and sanitary to prevent infection. When Cassie inserted the needle into my port, there was just a tiny pin prick and no other pain or discomfort. As they prepared to start the infusion, they kept repeating the info to each other. “480 MG, 30 minutes, 316”, phrases such as those. They started the pump, and we were on our way.

They did have food there, drinks, everything from sodas to coffee and tea, even hot chocolate. The food ranged from chips and cookies to sandwiches. I had a coke, but I wasn’t hungry, so I didn’t try out their food. Rosie had water.

The atmosphere was calm and unhurried, other than various monitoring devices around the room beeping for things like batteries or infusion ending. Rosie and I talked the whole time. I was calm, not stressed out at all, and felt nothing as the meds infused my system.

One thing I was glad for was related to the dressings they used to keep the needle in place. They noticed that the tape used by the port insertion people had damaged my skin, even to an allergic reaction to it. My skin has been bright red, painful or itchy, with some actual damage, since I got the port. The nurses at the infusion center used materials for sensitive skin, and it was so much better.

Once my infusion finished, one of my nurses told me to stay for half an hour. They wanted to monitor me since it was my first treatment. They reminded me several times of various side effects and when to call my doctor about any, but they also kept assuring me that most people tolerate this treatment well.

At last, we were allowed to leave, and we wasted no time getting out of there. We made our usual Starbucks stop on the way home. I was feeling tired, worn out, mostly from the emotional roller coaster of the past days, and I went to bed fairly soon after reaching home. I got up to feed Shani, then went back to bed and slept all night until about six this morning. I already feel tired again, and I’m writing this around ten in the morning. *shrug*.

So far, I feel fine. None of the scary side effects. But sadly, I did wake up with a pretty major arthritis flare up. This was something the doctors couldn’t predict for sure, but something that was possible, since my immune system is already compromised from the JRA. It’s affecting my neck, shoulders, elbows and wrists. My leg joints, other than ankles, are artificial, so no problems there yet. This could be coincidence, but I’m doubtful of that. I’ll just have to watch it and hope it doesn’t get any worse than it is.